Thursday, 29 July 2010

This week the American Psychiatric Association (APA) announced the updated fifth edition of their Diagnostic and Statistical Manual of Mental Disorders (DSM) and it appears they have identified three new illnesses: "mixed anxiety depression, psychosis risk syndrome and temper dysregulation disorder."

My only experience with mental illness is as follows: I was having a pretty shit day because I couldn't breath. I think feeling miserable about that is a pretty bog-standard normal reaction. I happened to be going to the doctors to update my prescription list and he said I looked rather down and did I think I was depressed and started asking me if I ever felt low or cried for no reason. Which made me cry.

So there he is thinking I'm depressed when actually I was only crying because I found the whole situation confusing and I was scared that maybe I was depressed and hadn't noticed it, which confused me even more. Anyway I turned down his suggestion of some mild anti-depressants but it completely shocked me at the ease that these drugs can be obtained. I mean, Jesus, girls cry all the time, it's just our way of venting frustration.

So of the new illnesses outlined in the APAs' manual lets just think about psychosis risk syndrome. By the psychiatric association's own admission this isn't even an illness. Its basically saying to someone they're at risk of developing a mental illness because they're experiencing abrupt personality changes. And from experience, someone telling you you might be mentally ill is incredibly stressful, and truly makes you question your sanity. There is a great article outlining the effects of over-diagnosis here.

So what's the point of the APA's manual? Well give this some thought:
"The US Senate Finance Committee has investigated at least 16 APA psychiatrists over their undisclosed financial ties to drug companies, including the APA’s own President, Alan Schatzberg who has stepped down as principal investigator of a National Institute of Health (NIH) funded study after months of Congressional scrutiny into his ties to the drug he was studying. He was found to have actually initiated the patent application of the drug he was studying to “treat psychotic depression.” You can read more about this here.

Another investigation published in April last year by people working for three major US universities, including Harvard medical school, found :
"Ninety percent of the authors of 3 major clinical practice guidelines in psychiatry had financial ties to companies that manufacture drugs which were explicitly or implicitly identified in the guidelines as recommended therapies for the respective mental illnesses. None of the financial associations of the authors were disclosed in the clinical practice guidelines."

Drug companies make shed loads from selling drugs. In 2007 it was estimated that drug company GlaxoSmithKline made £1 billion per year in profit from anti-depressant Seroxat. According to Forbes, at its peak, drug company Eli Lilly made $3 billion dolllar profits from Prozac in 2000 (profits fell subsequently when it lost its patent protection).

So the more illnesses that can be discovered, the more drugs can be invented to cure it. And more over, as the drop in profit from Prozac shows, there is a continual need for new drugs to be created as a drug company's patent only lasts a prescribed period of time before it must give up its secrets to a generic drug maker.

No wonder there is a concern over the conflict of interest between APA members and drug companies.

And although it's a US manual the DSM is used worldwide as a basis for diagnosis, research and medical education. I'm not saying that your local GP has a conspiracy going with GSK but a recent study by Rethink reveals that over two-thirds of GP's don't feel equipped to take responsibility for mental health - perhaps indicating they might rely on the APA's mental health 'bible' more than they should?

Patients are being offered antidressants or other drugs for mental illness when they're normally at they're lowest ebb, and most likely to doubt their own opinions, especially when they conflict with those of a doctor. But don't feel that drugs are your only option. Ask about therapy, counselling, the documented benefits of exercise in helping mental illness. Rest and exercise may create zero profit for a drug company but they can be fantastically valuable to a patient.

Tuesday, 27 July 2010

Many years ago, a guy I'd been dating for a couple of weeks called me up feeling really down and after much cajoling eventually told me he felt he was getting fat and it was making him miserable. Ever the one to try and be helpful, I told him that as I had to get up every morning at about 7am to do an hour-long medical regime, why didn't I give him a daily wake-up call so he could go for an hour's run every morning and he'd soon lose the weight?

That was the last phone call we ever had together. It turns out tough love wasn't what he was looking for.

So this week the nation read with horror about the country's fattest woman eating herself to death. It was so vaudeville grotesque that it embedded itself in the nation's consciousness. A woman so desperate for cake she died for it?

The woman in question had had a stomach staple operation but still couldn't quit eating fatty food, persuading relatives to smuggle in fish and chips to her hospital bed. So how should society persuade people to take charge of their own health?

A previous blog said that perhaps we're all relying too much on medicine as a quick fix, hoping it will get us better instead of investing in a time-consuming lifestyle change. This is more evident than most with diet habits. Stomach stapling, crash diets, slimming pills are vastly popular despite it being pretty well known across society that to lose weight you need to eat less and exercise more. But my phone call with my ex shows that people just don't want to hear that.

Despite loads of CF mothers complaining that their teenagers are rebelling against doing their meds, I never did. It never crossed my mind. So what made me do two hours of medicine a day without complaining? Well, my parents didn't set it out like it was something I could choose. I go to school, I do my meds, I hang out with my brother. Like everything else, it was just something I did.

Plus in exchange for taking responsibility for my medicine I got to go out and enjoy the fruits of my labour - I got to party (within reason) at house parties, pubs and clubs. So some carrot and some stick. And an understanding that if I wanted to feel healthy I had to put in some work to achieve it.

Some boroughs suggest paying people to lose weight but I'm totally against it. If someone can't envisage the improvement feeling healthier would do to their lives then I can't imagine that just paying someone £10 a week will persuade them to make a permanent life-change to keep the weight off.

But should society go further? Deny operations to those that haven't committed to losing weight, quitting smoking or stopping drinking? So that when money is spent, it makes a difference? The NHS is clearly strapped for cash so perhaps tough love is one way to solve the problem - but will the nation be prepared to listen?

Thursday, 22 July 2010

So how many people have filled in job application forms and come across questions about your health such as: "How many days have you been sick? How does this reflect your usual level of sickness?" and then the sentence "An offer of appointment will be subject to completion of a health questionnaire."

Under the 1995 Disability Discrimination Act (DDA) it's illegal to discrimate against candidates on the basis of a disability. But why would any company ask such questions if it doesn't have the intention of weeding out the physically weaker amongst it's candidates?

The DDA act has a major loophole that massively works against a disabled person. You're meant to disclose a disability BEFORE you are given a job offer, in theory so that the company knows it can make reasonable adjustments to your condition. If you don't do so then you risk adjustments not being made to suit your disability, or worse, being accussed of misleading your employer about your abilities. But how would you ever know that the employer balked at the thought of hiring someone disabled and turned you down for the position purely because of your illness? Disabled people have to make the decision whether to declare or not to declare. Personally if your illness isn't obvious I recommend keeping quiet. If it is obvious, directly raise the issue in your job interview, even if your employer does not, and make your case for why it won't affect your work.

Recent government proposals have focused on getting people off incapacity benefits and back into work. Ian Duncan Smith talks passionately about not letting people "languish" on incapacity benefit, and wants to work with them to help improve their job prospects.

But let's just acknowledge the white elephant in the room surrounding these proposals. Improving a disabled person's attitude to work is just half of it. Employers also need to change their attitude to disabled people.

A survey carried out in June 2009 for the Institution of Occupational Safety and Health (IOSH) found that 73% of employers would not hire people on Incapacity Benefit (now Employment and Support Allowance) or older people.

Every business needs to make a profit and I suppose an uneducated employer believes that someone with a disability will take more time off sick, complete less work and be overall less productive.

Well as someone who worked very hard for years while living with CF the reality is different:

I took less time off work for run of the mill illnesses as I didn't want to seem like I was always being ill.

Since I was little I've been subject to a very strict medical regime, which when translated to a work environment meant I was incredibly well organised and worked very efficiently.

I was good at problem solving as I've often had to find ingenious ways to manage my health while out and about (think sitting in a police riot van to use my electric nebuliser when I couldn't find a plug anywhere else) - lateral thinking that is easy transferable and beneficial to a working environment.

And crises at work get solved because I've gone through worse things in life - a cool, level head can normally find a way to solve even the biggest cock-ups

Overall many disabled people have an attitude and life skills which bring diversity and strength to a work force. But unless perceptions radically change amongst employers disabled people will continue to face insurmountable barriers when trying to get back into work - work which is hard enough for anyone to find during these weak economic times.

If the government really wants to reduce what it spends on disabled people it must find a way to open the eyes of employers so they become willing to see past their fears and instead recognise the positive aspects an illness can bring.

Tuesday, 20 July 2010

I was at a hospital appointment yesterday and things seem to be balancing out for me. Last year I was so used to going to hospital and being told that I needed another course of intravenous antibiotics that I'm still surprised when I'm sent home without them. I always pack my bag with my nebuliser, toothbrush and some underwear just in case as I normally go back to my parents for some TLC when I start these drugs- they're so strong they make me feel like shit initially.

So its good to hear that seven months after cutting back on work, although my lungs aren't really working any better at least they aren't constantly getting infected meaning I'm less reliant on hardcore medicine.

There was a great article in the Guardian over the weekend about how best to cope with depression. It's such a common malaise in society, with studies suggesting 20% of the UK's population deal with depression at some point in their life. Yet the rising predilection for prescribing antidepressants doesn't seem to be helping - with only a 50% success rate, and a 25% relapse rate for those that drugs do help.

So my recent hospital appointment and this article got my thinking that perhaps we're all too reliant on medicine alone to get us better, looking for a quick fix when actually we might need a life change.

In the olden days, when there were fewer medical advances, rest, good food and social connections were what pulled many people through. Earlier in the year my mum mentioned to a work colleague that I was pretty ill and the next day a wonderful Greek grandma came to the office looking for her. It was the mother of my mum's boss - dropping off a home-made moussaka to help me get better! I cannot tell you how touched I was.

We're all so busy nowadays, pulled between social commitments, often travelling long distances to meet friends, knowing few people in our streets, technologies that mean we're never quite 'turned off' from the world. We rarely give ourselves time to just rest, recuperate and piece ourselves back together.

I'm on so much medicine at the moment, and believe you me I would never stop taking any of it, but I've learnt the hard way that if you don't recognise your own physical limitations then medicine alone won't do the trick. Illness does inconvenience our lives but the more we build in rest, sunshine and friends the more likely we are to get better more quickly, or, in my case, stay healthier for longer.

Wednesday, 14 July 2010

Ok so it's taken me a couple of days to respond to Monday's news that the NHS is in for a dramatic shake-up (blame it on the weather, the heatwave wiped me out completely - it's weird to think of myself in the 'vulnerable' group when it comes to things like that).

But anyway while we were all busy eating lollies and loving the recent weather, the Government was preparing to launch a white paper called 'Liberating the NHS' that plans to radically alter the way the NHS is funded. It wants to give £80 BILLION directly to GPs to decide how best to spend it on patients, scrapping Patient Care Trusts (PCT) along with it.

I'm not a big fan of PCTs, they have a habit of implementing localised policy that goes against the decisions of NICE, the body governing what drugs and treatment should be available to patients nationwide. Last November I was told by my PCT that I was no longer allowed to be given a nebulised antibiotic called Colomycin as according to old medical guidelines it should only be given in a hospital environment. Except I, along with countless other people with lung conditions, have been taking it at home for two decades. So clearly this sudden decision was one based on saving money.

My GP called the PCT to protest: "Sharon needs easy access to her medicines to be able to concentrate on resting and staying well, not worrying about receiving the drugs she needs". Despite this call, the PCT still said no. (I still get this drug, via hospital, so the NHS has saved no money, the patient has merely been inconvenienced.)

So given that scenario the new plans in principle are an interesting idea. GPs know their patients well and can best decide what treatment they need. However the truth of the matter is that the NHS is still cash-strapped and always will be so my concern is that GPs will instead be faced with a conflict of interest - a patient needs a drug he knows he cannot afford to prescribe. What happens in that scenario? He keeps quiet and offers a cheaper alternative that he knows is less likely to do the job?

The new plans also include a patient being able to choose where to visit a GP, meaning they no longer need to live in their GP's catchment area. But in practice will this be allowed to work in reverse? Perhaps GPs will balance the books by limiting the number of 'expensive' patients they look after, and it's exactly these patients who will be too ill or too busy with time-intensive medical regimes to be able to travel far. It's long been documented how people struggle to find an NHS dentist, will the same soon be said of GPs?

The Government has said hospitals will be encouraged to move outside the NHS to become a "vibrant" industry of social enterprises. Effectively meaning they will need to 'pitch' for money from GPs and that their cap on how much private work they can do will be removed.

The idea is that hospitals will have to become very good at care to ensure they survive, as otherwise GPs won't refer their patients there. But instead they could feasibly cut their prices to lure in patients - meaning those hospitals that achieve less good results could ensure survival by offering services to GPs at prices that reflect this lower quality, in a similar way that lower-rated Universities can offer cheaper tuition fees to attract less well-off students. In addition, waiting lists for NHS patients could soar as hospitals prioritise private patients, who will be unlimited in number. Notably, the health secretary Andrew Lansley already abolished hospital waiting lists.

And there will be no "bail-outs" if a hospital overspends and goes bust. This is completely unacceptable. Social services are provided in a local area to provide access to the care that local people need. If a hospital is failing it should be helped to improve not just be allowed to fail and close down with no thought for the needs of the local community.

And what about patients like me? I never see my GP except for prescription renewals and a common cold. Instead I visit my hospital doctors at least once a month, they decide on my care plan and drug regime and tell the GP what I need. I have no idea how this scenario will be dealt with when GPs are meant to commission hospitals, not the other way round. But it adds to the overall concern towards the Government's plan: it's untested, unpiloted and is meant to be implemented in just 24 months time.

This blog raises a lot of questions I don't know the answer to, but I'm not sure if the Government does either.

Thursday, 8 July 2010

It's a really warm night and it's late. It's meant to be 30 degrees tomorrow and it reminds me of a summer in my early teenage years when the grass was burnt yellow during the whole school holidays, pricking the soles of your feet if you walked barefoot.

Long days of afternoon headaches brought on from drinking beers in the park with good mates, itching skin from too much sunshine with only a cloying smell to prove you bothered with suntan lotion at all.

Summer full of possibilities.

And yet at the back of your mind, as you pack your days full of heat, rarely indoors outside of work hours, you know it'll end. The English summer is so fleeting, days darken, the breeze picks up, the sandals go to the back of the wardrobe.

It's National Transplant week this week. There are currently about 8,000 people waiting on the transplant list. Three people die each day as they couldn't wait any longer.

For the rest, who are waiting for the phone to ring and literally fighting to stay alive so they are still here to answer it, they may have just one final, dark winter stretching ahead of them. Possibilities gone.

Its not nice to think about being an organ donor, it might mean contemplating your own mortality for the first time. But believe me, from someone who's future will at some point depend on a transplant, you couldn't give a better gift.

You can sign up here. It doesn't take long. If its something you've always intended to do but never got round to it, then do it now. Or tomorrow at work instead of making a cup of tea. But make sure you do it.

Monday, 5 July 2010

Listening to 6 Music as I start to write about a new test that may be able to accurately predict the onset of a woman's menopause and suddenly PJ Harvey's voice pulls my attention to her lyrics: "Things I once thought unbelievable in my life have all taken place...."

But rather than it make me think about the benefits of this new medical innovation, it turned my thoughts to the limitations of it.

Iranian doctors believe that by measuring levels of a hormone called Anti-Mullerian Hormone (AMH), they can accurately predict within 4 months when a woman may go through menopause, offering women better control over their fertility and giving them a more informed choice of when to start a family.

As menopause alone is not the only factor limiting a woman's fertility (according to one expert, fertility begins to drop from the age of 28, and by 30 one in three embryos will be genetically flawed), I really can't see the benefits of this test. If anything it just provides a false sense of security, when in fact life is anything but predictable.

When I was growing up in the eighties, there was a lot of talk about finding a genetic cure for CF. Well its now 2010 and there still isn't one. In fact, there isn't a single cure for any genetic illness to date. Thankfully even in my early teens I never pinned my hopes on a cure. I just knew I had to live the life I had available to me in the best way I knew how. This was nevertheless more problematic than it might seem. The life expectancy of CF has never been something to be happy about, but even knowing it is limited doesn't actually mean much as some CF patients die very young while some make it to a pretty decent age and even have children. The variability is massive.

So you end up trying to straddle two life philosophies simultaneously - living life for the moment as well as planning for an unpredictable future. So do you jack in the job you hate to go travelling since life is too short to waste on being miserable? Or stick it out in the hope that it leads to a better job in a year's time which would provide more long-lasting happiness than a two-month jaunt around Thailand? I don't know the answers, just that you always somehow find a solution to the new challenges life throws at you.

So back to the issue of fertility. It's a precious thing, and it becomes even more precious as you get older. Innumerous medical tests can't actually come close to predicting the unexpected nature of life. Meeting the right person, getting pregnant from a one-night stand, losing a stable income, getting a great new job, losing a parent and a future loving grandparent, getting cancer, IVF that works, IVF that fails. All this stuff of life is just as important as how many eggs you have left. Perhaps having a baby should be more about what you'd need to sacrifice at any given moment to have a child and whether that sacrifice is worth it for you in comparison to a potential future without children. (And, as an aside, surely society would be better off investing in flexible working patterns and innovative child care solutions to reduce the sacrifice a woman must make when it comes to employment prospects, rather than focus on ever-new ways to extend a woman's fertility beyond its natural peak?).

Even as someone so dependent on medicine to stay alive, for me science alone has never been able to deal with the real difficulties of living. And it brings me back to PJ Harvey's lyric: information and imagination alone won't let you create a future. The real life-affirming question is: "What do you choose?"

The Buff

I have an incurable genetic illness called Cystic Fibrosis, to date I've had 13 operations, and been a patient in 18 different hospitals. I had a double lung transplant on 30th August 2013. I know a bit about the NHS.
With this blog I'll let you know my experiences with the NHS, my views on disability and my opinions on the changes that affect health care and disability issues - and occasionally I'll talk a little about my ongoing health battles - if I think it's interesting enough.
You can follow me on Twitter: @SharonBrennan